You got it thanks to your father. Your cheerful character? That really comes from your mother. We all have traits that we inherit from our parents. This heredity brings good things, but sometimes not-so-good things. Huntington’s disease is one of those less-good things.
What is Huntington’s Disease?
Huntington’s disease is a hereditary brain disorder, in which the symptoms get progressively worse. Your body moves when you don’t want it to. Talking and swallowing may become more difficult. Your behavior also changes. For example, you become gloomy, anxious or quickly angry.
Huntington’s disease is caused by an abnormality of a certain gene. This abnormality is hereditary, so you always get the disease from one of your parents. If one of your parents carries the gene, he or she will get the disease. The chance that you also carry the gene is then 50%.
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Recognize Huntington’s Disease
You can suffer from various complaints if you have Huntington’s disease. The symptoms will go on worse if longer this disease. The longer you have the disease, the worse the symptoms become. You have physical complaints, but also mental complaints. Common characteristics of Huntington’s disease include:
- You make movements without wanting to.
- You suffer from stiff muscles.
- You think and see strange things.
- You have trouble walking.
- You become clumsier.
- You lose weight.
- You forget things.
- You get angry quickly.
- You feel gloomy.
- You may suffer from multiple complaints. These are can differ per patient.
Huntington’s Disease Diagnosis
With Huntington’s disease, your family history is important. You inherit the disease from one of your parents. The doctor will ask about this if you have symptoms that resemble Huntington’s disease. Does one of your parents also suffer from the same complaints? It is important to tell the doctor yourself.
Especially at the beginning of the disease, it is not immediately clear whether the complaints are part of Huntington’s disease or are caused by something else. At first, it seems like you are very nervous, or maybe you have burnout. That makes it difficult to make the correct diagnosis.
Incidentally, spontaneous movements are often not the first symptom of Huntington’s disease. Often your family or partner can tell the doctor that you have had problems with your concentration before. You often don’t realize that yourself.
During a DNA test, the doctor will take some blood from you. They test your blood in a laboratory. Your genes are being looked at. If you have Huntington’s disease, this can be seen by an abnormality in one specific gene. That research gives 100% certainty.
Research Before You are Sick
If one of your parents has Huntington’s disease, there is a 50% chance that you will also have the disease. So you can have an examination done, even if you are not yet ill. This way you know whether you carry the gene and may also become ill. Or if you would like to have children and want to know if you can pass on the gene to them
Stress from the DNA Test
Undergoing the DNA test can be very stressful. The outcome can turn your life upside down. That is why you can only have such an examination done from the age of 18. In the Netherlands, only 20% of children opt for an examination.
Prospects with Huntington
Huntington’s has no cure. It is a disease in which the symptoms get worse and worse. In the beginning, they are not so noticeable and you will not be bothered by them. If the complaints get worse, you notice more and more things that you are deteriorating.
- Huntington’s disease progresses in a number of steps, with the symptoms getting worse:
- You can still do almost everything independently, such as your work and your financial administration.
- Your work needs some adjustments and you need some help with your administration.
- You need help in the household and with your daily care. You can no longer work, but you can still live at home.
- You need intensive home care or you live in a nursing home.
You can no longer stand or walk, you also have great difficulty swallowing or talking.
In short, the daily things around the house are becoming increasingly difficult to do. As a result, you need more and more help. Your loved ones can help you with that first. Eventually, the complaints often become so serious that your loved ones cannot help you enough. You must be admitted to a nursing home.
If you have Huntington’s disease, you will eventually die from its effects. For example, because you have difficulty swallowing and can no longer eat. Or you just choke on the food.
So you do not die from Huntington’s disease itself. But the disease makes you more susceptible to other problems, such as an infection or pneumonia. They will eventually cause you to die.
Huntington’s is caused by one gene, one abnormal protein. Scientists look for new medicines in different ways. For example, they are looking for a way to use injections to inhibit the production of Huntington’s protein. The injection goes into the spinal fluid or into the brain. Research is also being done to improve the breakdown of the clot-sensitive Huntington protein.
In principle, it is possible to determine the abnormal gene at an early stage, with 100% certainty that people will develop Huntington’s disease. That’s why a lot of research goes into ways to prevent the disease from happening. For the time being, there is no therapy for patients yet. However, there are good developments.
In any case, it is important that you are supervised before, during, and after the research. Are there any family members who will receive information through the research about whether they themselves may have Huntington’s disease? Involve them in the decision of whether or not to test.
DNA testing is almost never done for minors without complaints. During pregnancy, it is possible to determine whether the unborn child is a carrier of the Huntington gene. This test is only done if you decide in advance that you will terminate the pregnancy if your unborn child carries the gene.